In 2014 a groundbreaking new program in narrative medicine appeared in one of the world’s most prestigious hospitals. Three years on, the Hippocrates Med Review sat down with AfterWard’s co-founder, Lauren Small, to discuss the progress and future of the popular series.
For about an hour after work, the doctors continue diagnosing.
Their subject varies month-to-month. The variety of cases as broad as the human mind can conceive.
Nurses, social workers, and others provide their input. Free of the hierarchy that usually defines their work at the Johns Hopkins Hospital, staff speak freely at the same table as their bosses. All opinions are welcome.
And leading the discussion? A doctor, of course, but not one of medicine. Lauren Small holds a PhD in Comparative Literature from Johns Hopkins University. After a long career as a writer, she pens the next chapter of her life in monthly editions of AfterWards, a program of narrative medicine she co-founded some three years ago.
At AfterWards, people across all disciplines in the hospital come together twice a month to experience and discuss a selected piece of art, poetry, literature, or music. The work is chosen to shed light on some aspect of hospital life from the care provider’s perspective.
“The first piece we ever did,” recalls Small, “was a sonnet called Surgical Ward. The theme of the day was ‘bearing witness to suffering.’”
Suffering is something in abundance at hospitals. Time is not. Yet everyone present at an AfterWards session comes voluntarily, strictly on a drop-in basis. They choose to dedicate an hour of their day to an appreciation of art, an inward examination, and an earnest attempt to get out of their comfort zones. Perhaps suffering is commonplace at hospitals, but all too rarely does anyone get opportunities like in AfterWards to talk about how they feel about it.
“People are hungry for it,” says Small, “They say, ‘Bring me art. Bring me literature.’” A slight pause. “‘Bring me back to humanity.’”
We are brought back to December 2013, as Small and then-pediatric medicine program resident Ben Oldfield are deciding on a name for their vision. They have no funding, no backers, and no idea if their idea will work. But they have the determination to see what happens.
“It took us a while to come up with the name ‘Afterwards,’” Small explains, “But it seemed to encapsulate what we were trying to do. We wanted people to come together at the end of the day, after they had been working on the wards, to decompress, reflect on their experiences, and build a community based on art and literature.”
With this plan, to start a program in narrative medicine, they presented their case to a number of potential backers at the hospital. Small remembers them as gracious, kind, and supportive…but that they also had “no resources whatsoever.”
“They had no money to give us, and they also couldn’t dedicate any time or space…If we could make it happen they would be glad about that, but they had nothing to offer us.”
There were more intangible obstacles than money and a room.
“There was some concern from some people that this was a ‘touchy feely’ kind of program, and Hopkins is a hardcore science place. So some people were a little skeptical that this would attract any kind of appeal.”
Against the odds, Small and Oldfield were able to secure a room on the 8th floor of the hospital’s Children’s Center, where Oldfield and Small’s husband, a pediatric oncologist, worked. Nobody had heard of the program then, and the only advertisement for it was a blast email and some word-of-mouth.
At the time, Small said, “If we only have one person, we’re going to do the program for this one person.”
But some eight people attended that first session, proving that even with limited means and little notice, the program had a place at The Johns Hopkins Hospital. From humble beginnings, today the program attracts around twenty regulars. Instead of Small having to lead every discussion, the members have taken to bringing their own pieces for the group to review. Their contributions have made for some of the most powerful AfterWards sessions yet.
One time, a psychiatrist brought in sculptures that a recently deceased patient had gave her as a gift in an expression of their illness. In another session, a young nurse shared an article in the New Yorker about her line of work in hospice and end-of-life care.
Not every edition of AfterWards is saddening. A neurologist once showed the group artwork created by children he treated suffering from headaches. One of the most challenging aspects of the neurologist’s line of work is diagnosing the difference between a minor headache and a migraine. After encouraging his young patients to draw what they felt, the doctor found something remarkable. Over time, the neurologist discovered that there were features in their drawings that could lead him to better diagnose what was going on in the children’s heads.
The promise of AfterWards points to a larger trend in medicine: the rise of the so-called “medical humanities” in clinical practice. Narrative medicine, the ability to recognize, interpret, and be moved to action by the unique story of a patient’s illness, is a field that has groups like AfterWards to thank for its rising popularity. In a time where medicine is getting ever more efficient, and in some cases more mechanized, there are doctors who insist on keeping the inherent humanity of their profession in the center of things.
“We didn’t want this to be just a book club,” Small says of AfterWards, “We wanted to make a statement that these kinds of programs belong inside the hospital…to hold it inside the hospital as part of the work day gave it value.”
The other aspect of the non-book club format is AfterWards’ insistence that its participants write about what they think right after discussion. A prompt is given based on the work’s theme, and the group writes in total silence. According to Small, nobody is forced to share afterwards, but people generally do.
“Who,” Small asks, “takes care of the caregivers?” At the end of the day, this small moment of self-reflection may be the only real opportunity for the participants to express themselves in writing.
Small herself has benefitted from the program. After years spent alone at a desk as a writer, she has a new community with which to experience art with.
“Writing is an isolating experience,” Small says, “It’s been a nice thing that gets me out and about, and able to bring my skills to a diverse community.”
Coming from a family of doctors, Small has spent her entire life among medical professionals. What she’s found through them and through AfterWards is that art has a firm place in their minds.
“Yes, arts do matter, even if you’re totally immersed in STEM. We find doctors want the humanities to be better at what they do.”
After all, when examining a painting or dissecting a poem, no doctor can say for sure what is right or wrong. They must use their empathy, their observation, and their humanity to make their best guess. Small puts it another way.
“We’re all equally helpless in the face of art.”